UNICEF UKRAINETERMS OF REFERENCE

International Consultancy for Assessment ofthe Early Intervention Services1 in Ukraine

Country: UkraineAssessed period: January 2010 – July 2014 & January 2002 – December 2006Duration of assessment: 34 days, November – December 2014

1. Background and Context

Of over 8 million children living in Ukraine, 167,000 children are registered with disabilities, with more than 40,000 of these children living in institutions. Of those children with disabilities 2, it is estimated that in 2012 there were more than 12,000 children under 3 years with disabilities (83.2 per 10,000 child population of 0-3 years of age) and more than 33,000 children between 3-6 years (179.6 per 10,000 child population of 3-6 years of age).3 There is strong stigma and discrimination against children with disability and hence inclusion of children with disabilities in the society and their right to access essential services in healthcare, schooling and social support for them and their families are yet to be realized. Eliminating the placement of children in institutions has not yet clearly become a regular practice regarding support and care for children with disabilities, as medical professionals still advise parents with children having more severe disabilities to place them into institutional care from birth. Furthermore, parents of children with disabilities have limited knowledge about options available or on the advantages of keeping the children at home, and there is lack of mechanisms and comprehensive services to support families with children with disabilities.

At the same time, early intervention services have been developing in Ukraine for more than 10 years. NGO partners from Lviv and Kharkiv have developed their services based on international 1 In this research, “early intervention,” is meant as a system of coordinated services that promotes the child's age-appropriate growth and development and supports families during the critical early years (from birth to 6 years). The age for intervention can vary from 0-3 years to 6 years, but a critical part is starting intervention early and before 3 years. Development of these services sometimes has been targeted to children with developmental disabilities or delays, but early intervention is not limited to children with these disabilities. Early intervention services often address needs of young children who have been victims of, or who are at high risk for child abuse and/or neglect, or where the child or family faces other vulnerabilities to enabling development growth.

2 The term ‘a person with disability’ shall be defined here according to the Convention on the Rights of Persons with Disabilities whereupon ‘persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.’ In this document the term ‘a child/children with disabilities’ is used to define a person with disability under the age of 18. Given the context of the Ukrainian legal framework, the notion ‘a child with disabilities/children with disabilities’ used throughout this text is an equivalent to the term ‘disabled child/children‘ used in the Ukrainian legislation. According to the Law of Ukraine ‘On Rehabilitation of People with Disabilities in Ukraine’, a ‘child with disabilities’ is a person under 18 years (majority) with long-tern disorder of the functions of the organism, which under the interaction with external environment may lead to limitation of the person’s life; therefore the state shall establish conditions for realization of the person’s life on a par with other citizens and ensure his or her social protection.

3 UNICEF, Creating a Good Start for Children with Special Needs & their Families: Early Intervention, p11

early intervention standards, leading the development of early intervention approaches among other colleagues from different agencies (including NGOs, baby homes, and rehabilitation service centers). These initiatives are now at a stage where their experiences could be disseminated to a national level to enhance early intervention responses throughout Ukraine. UNICEF’s strategy to assess the impacts and cost the work of organizations conducting such services assumes that establishing a Ukrainian evidence-platform for early intervention will serve as the tipping factor for taking the approach to scale.

This process requires a more systematic analysis, which can provide insight into the effectiveness of the services, approaches, or strategies as well as the outcome or impact that the services are contributing to with regards to children and families. Findings from this research will become the factual basis for policy advocacy, as well as for future expansion and enhancement of early intervention services in Ukraine. Furthermore, political commitment for this process exists, with the priority expressed by the government on 27 February 2013 at a Cabinet of Ministers meeting within the presidential social initiatives to enhance rehabilitation services for children with disabilities, modelling services such as those in Kharkiv.

Children with disabilities are a key focus for UNICEF’s equity response4. In UNICEF Ukraine’s Country Programme 2012-2016, there is a commitment expressed to strive towards a 25% decrease in the number of children in institutions due to disability or development delays. UNICEF believes that interventions at the earliest age for children with disabilities or at risk of disabilities have the largest impact, providing a strong foundation for children and their families to address the needs of children with disabilities and be more socially included. A theory of change document on early intervention has been drafted by the UNICEF-Ukraine office and is attached to this Terms of Reference. Research findings will also establish a knowledge base for UNICEF’s equity focused evaluation5 scheduled at the end of its country programme in 2016.

2. The Programmes to be assessed

In this research, “early intervention,” is meant as a system of coordinated services that promotes the child's age-appropriate growth and development and supports families during the critical early years (from birth to 6 years). The age for intervention can vary from 0-3 years to 6 years, but a critical part is starting intervention early and before 3 years. Development of these services sometimes has been targeted to children with developmental disabilities or delays, but early intervention is not limited to children with these disabilities or delays. Early intervention services often address needs of young children who have been victims of, or who are at high risk for child abuse and/or neglect, or where the child or family faces other issues to enabling development growth (e.g. poverty, families facing dependencies, pre-mature birth etc.).

4 For UNICEF, equity means that all children have an opportunity to survive, develop, and reach their full potential, without discrimination, bias or favoritism. This interpretation is consistent with the Convention on the Rights of the Child (CRC), which guarantees the fundamental rights of every child, regardless of gender, race, religious beliefs, income, physical attributes, geographical location, or other status. This means that pro-equity interventions should prioritize worst-off groups with the aim of achieving universal rights for all children. This could be done through interventions addressing the causes of inequity and aimed at improving the well-being of all children, focusing especially on accelerating the rate of progress in improving the well-being of the worst-off children.5 An equity-focused evaluation provides assessment on what works and what does not work to reduce inequity, and it highlights intended and unintended results for worst-off groups as well as the gaps between best-off, average and worst-off groups.

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Key principles of early intervention, which are found in the different programmes to be assessed, are having: (1) a family-centred approach; (2) coordination of services, using a multidisciplinary team of specialists; and (3) individualized interventions, which are accessible and provided on a regular (continual) basis.

Early intervention services have been extensively developed in Kharkiv’s Institute of Early Intervention as well as Lviv’s Dzherelo NGOs. Both organizations are NGOs with greater flexibility in structuring. In Kharkiv, early intervention approaches have been disseminated to other institutions building capacities to enhance access of more inclusive medico-social services for families.

In addition to the assessment of the two NGO services, the research should analyse how early intervention principles have been incorporated into other state agencies and the capacities to build on these initiatives to make early intervention principled services more accessible. For the baseline of the assessment, the assessment will also cover state residential institutions for children with disabilities or developmental delays.

In this context, assessment will be three-fold:(1) Assessment of the work of Kharkiv/Lviv NGOs work over the last 5 years and whether outputs

and programme activities are leading to expected outcomes;(2) Assessment of the “pathway” of children (now adolescents/ adults) and their families who

worked with Kharkiv/Lviv NGOs in early intervention services;(3) Assessment of state agencies that provide medical and social/rehabilitative support to young

children with disabilities; and(4) Analysis of whether the early intervention models in Kharkiv and Lviv substantiate UNICEF

Ukraine’s theory of change (hypothesis, assumptions, linkages and expected outcomes) on early intervention with evidence of envisaged change.

Organisations to be assessed:

1). Kharkiv: Institute of Early Intervention

Established: 2000

Main objectives of the services: Provide assistance with both a child’s cognitive and developmental delays, as well as support

advancement of self-help and social skills during a child’s early years; Family-oriented support for families and children with disabilities and/or developmental delays

or health impairments by interdisciplinary teams.

Early Intervention Team:Director; psychologist, speech therapist; physical therapist; coordinator.

Age Group: 0-4 years3

Geographical Coverage: Involves day services for families from the city of Kharkiv

Strategy:The services of Institute of Early Intervention has the parents as key partners in providing psychological and pedagogical support to young children with disabilities and/or developmental delays – focused on rehabilitation and abilitation of children while normalizing lifestyles for families and working toward social integration and inclusion

Project Interventions: Development evaluations of children Monitoring of children’s development Case management approach to services: profile of the child’s development and an individual plan

with involvement of family members, realizing the plan through individual and group therapy Home visits Counselling for family members; informational support for parents; parent clubs Play therapy, involving caregivers in the process Provision of crisis groups that counsel parents in maternity wards Accompaniment of children to transition from early intervention programme in pre-school to

other development programmes

Key Stakeholders:The end beneficiaries are children with disabilities, development delays or risks of disability, and their families.

Other partner organizations in Kharkiv applying components of early intervention:(1) Children’s Polyclinics #2 and #14 : EI service since 2012

(2) Kharkiv Oblast Baby Home #1: EI service since 2007

Objective: Accompany children with disabilities and their families to provide support and multi-profile rehabilitation.

Age group: 0 up to 4 years

Provide support to children with: Nervous system impairments (neurological impairments) Congenital disorders (abnormalities of structure, function, or body metabolism that are

present at birth) Genetic disorders with psycho-physical delays/disorders Children with autistic spectrum disorder

Intervention Components: Medical diagnosis (EKG, ultrasounds, etc.) Medical monitoring Correctional/ rehabilitation therapy

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Medical treatment for convulsive disorders (Institution is licensed to provide medical treatment)

Services for medical rehabilitation Psychological-pedagogical rehabilitation

2). Lviv: “Dzherelo” Rehabilitation Center

Established: 1993, as a grassroots association. Early intervention services - since 2002.Since 2008, part of the Center is a communal organization (Lviv City Rehabilitation Center).

Main objectives of the services: Provide a complex of services to families with young children with disability, health problem or

risk of developmental disorders, focused on early identification, treatment and prevention of disorders in child’s development and of issues in a family.

Further overall development of children with disabilities, their self-fulfilment and full social integration by providing - in close cooperation with the family - integrated rehabilitation to children and ensuring child’s full participation in the society.

Early Intervention Team:Paediatrician, child neurologist, speech therapist, physical therapist, psychologist, psychotherapist, medical registrar.

Age Group: 0-5 years

Geographical Coverage: Lviv and Lviv Oblast, as well as all Western Ukraine

Strategy: Like IEI in Kharkiv, Dzherelo’s services have parents as key partners in providing psychological and pedagogical support to young children with disabilities and/or developmental delays – focused on rehabilitation and abilitation of children while normalizing lifestyles for families and working toward social integration and inclusion. At the same time, Dzherelo’s work extends to support children with or at risk of disabilities and their families throughout the life cycle (schooling, integration, support with work opportunities etc.)

Project Interventions:- Development evaluation of children (motor, psychological, speech, and social development).- Identification of key issues and goals of EI.- Integrated individual rehabilitation program.- Family support, incl. psychological.- Feeding therapy.- Consultations on social and legal issues.- Peer support family group meetings.- Referral to other specialists.- Hydrotherapy.

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- Kindergarten.- Social accompaniment.

Key Stakeholders:The end beneficiaries are children with disabilities, development delays or risks of disability and their families.

Partner organizations in Lviv: Lviv city children polyclinics; Lviv Genetics Center; Departments of Intensive Care for Newborns.

3). State institution: Specialized Baby Home focused on children with disabilities (concrete baby home to be chosen after agreement with the Ministry of Health).

Specialized baby home is an institution for medical and social care for orphan children and children deprived of parental care, with physical or mental disorders (III to V groups of health) aged 0 to 4 years, as well as children:

with organic lesions of the nervous system and mental impairments; with organic lesion of the central nervous system, incl. cerebral palsy without mental

impairments; with dysfunction of the musculoskeletal system and other disorders in physical development,

without mental impairments; with hearing and speech impairments; with vision impairments; TB- and HIV-infected children.

4). State institution: Social Rehabilitation Center for Children with Disabilities

Social Rehabilitation Center for Children with Disabilities is a rehabilitation facility for children with disabilities under the Ministry of Social Policy and social protection authorities. It provides rehabilitation services aimed at correcting disorders and/or impairments of and developing children with disabilities, teaching them core social and personal skills, and establishing conditions for their integration into society. It also provides training to parents of children with disabilities for their follow-up rehabilitation in family environment after the service has been provided at the center. Some of these rehabilitation centers have already established specialised “mother and child” sections that focus on rehabilitation work with young children (and in some cased, depending on the center management the age level has been reduced to 6 months rather than 2 years).

3. Rationale

Early intervention services have been developing in Ukraine for more than 10 years. NGO partners from Lviv and Kharkiv have developed their services based on international early intervention standards, collaborating with European (e.g. Holland), North American (e.g. Canada, US) and

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Australian colleagues, as well as partners from St. Petersburg’s Institute of Early Intervention. These NGO partners have led development of early intervention approaches among other colleagues from different agencies (including NGOs, baby homes, and rehabilitation service centers). Through these efforts, there is an “informal” early intervention network from more than 10 regions of Ukraine’s 27. In 2013, UNICEF conducted a mapping of existing early intervention practices, which revealed a growing movement of state and NGO colleagues applying portions of early intervention practices.

These initiatives are now at a stage where their experiences could be disseminated to a national level to enhance early intervention responses throughout Ukraine. UNICEF’s strategy to evaluate the impacts and cost the work of organizations conducting such services assumes that establishing a Ukrainian evidence-platform for early intervention will serve as the tipping factor for taking the approach to scale. As lack of information affects the government’s ability to design appropriate services and measures for children with disabilities and their families both on a normative level (including finance, standards, guidelines, and protocols) and on a service delivery level, there is a need to document and assess the results of the model services along with evidence of outcomes.

Assessment is undertaken when the government is increasingly interested in ensuring and enhancing services to children with disabilities and their families. Ukraine has politically made a commitment to move from institutional care to family-based care, including for children with disabilities. The government called for transformation of baby homes by 2017 (Order of the Ministry of Health #70 of 02.02.2010 On Activities to Develop Baby Homes). In addition, a presidential order was made in 2013 to enhance rehabilitation services for children with disabilities modeling services such as those in Kharkiv.

It is expected that the assessment results will reveal the extent to which the early intervention services are contributing to: reduction of young children (0-4 years) entering or staying in residential care (baby homes); increase in the health/ development abilities of young children with disabilities; and increase in the capacities of these children’s families to manage their children’s needs.

It is also expected that the assessment results will provide understanding about the ability for early intervention services to be replicated throughout Ukraine.6 Government ownership in the expansion and incorporation of early intervention practices and transformation of baby homes is crucial for national scale up. Throughout the process, there will be documentation on implementation of early intervention approaches with agreement by the national state partners.

4. Objectives

The objectives of the formative assessment are as follows:1. To analyse whether outputs and activities within the project are leading to expected

outcomes and goal of the project;2. To assess and analyse the bottlenecks and barriers, including policies, practices and other

structural barriers in service model implementation; 3. To document lessons learned and good practices of the service model activities, along with

evidence of outcomes;

6 UNICEF’s 10 criteria for successful modelling shall be used to assess the replicability or scale-up of the models.7

4. To demonstrate, based on evidence, whether or not a nation-wide scale up of the service model approach and practice is possible and whether a scale up will effectively lead to closing of equity gaps in the area of work;

5. To assess the validity of UNICEF Ukraine’s theory of change on early intervention and revise the theory of change according to the findings; and

6. To develop strategic, policy and implementation recommendations of how the on-going service model, if achieved its key outcomes, will be efficient and sustainable in future, thus informing policy development and framework of the national scale-up of the pilot.

End-Users of Assessment Findings:

The primary user of the research findings are the Ministry of Health, the Ministry of Social Policy, the Ministry of Education, Kharkiv and Lviv local authorities, partner NGOs implementing the early intervention services in Lviv and Kharkiv, UNICEF, and local organizations involved in the development of policies and services related to young children with disabilities and families.

It is expected that the assessment results will help the primary users, such as national and regional authorities as duty bearers, to inform the way forward in the enhancement and national scale up of the service model of early intervention services for children with disability. It will help to identify, based on evidence, what the essential steps, strategies, and environment are in order to achieve the intended results. NGOs providing various services for vulnerable groups such as children with disabilities will use the results of assessment as advocacy instrument for expansion of the service model in the country as well as to adjust or enhance the services and approaches, based on the findings. UNICEF will also use findings for evidence-based advocacy and to provide evidence to the donor community for the effectiveness of investment. All stakeholders are expected to use the findings, conclusions and recommendations to further develop policy and framework to achieve positive impact for children and women, in particular children with disabilities and their families.

5. Scope

The assessment will comprise two approaches:

1). Review and analysis of the early intervention services in comparison to conventional medical approach services provided in state care institutions.

2). Assessment of children and families who received early intervention services in 2002-2005 in ‘Dzherelo’ Rehabilitation Center or the Institute of Early Intervention, their health, participation in education, social inclusion, relations inside the family, quality of life, in comparison to children who resided and received services in state care institutions in 2002-2005.

The assessment will review early intervention practices/services in the first years of introducing the services as well as during the last five years until the present (July 2014). For the different agencies, the time line will be the following:

o ‘Dzerelo’ (Lviv) and the Institution of Early Intervention (Kharkiv): 2010-2014 & 2002-2005 retrospectively.

o Children’s Polyclinics in Kharkiv: 2012-2014.8

o State child care institutions: current practices 2010-2014.

The scope of the assessment will focus on the effects of the early intervention services for children and their families (impact level) as well as identify the lessons learned about “what worked” and “what did not work” (outcome level) and to answer particularly the question of feasibility for replicating these practices on a regional or national scale. In the baseline assessment of state care institutions, the assessment will focus on the effects of conventional social and medical services on children and their families.

Overall, each service provider should be assessed and analysed for its approach, innovation, evidence of impact on children’s development capacity and family’s coping mechanisms, standards to be used in developing regional or national policy, and costing.7

The assessment should be conducted in line with UNICEF’s determinant analysis (Annex 2). The assessment should identify whether there is evidence that the key elements of the UNICEF theory of change, i.e. the hypothesis, assumptions, linkages, expected outcomes and strategies, hold true and demonstrate that expected change is happening, or whether there is a need for adapting elements of the theory of change. Example of questions to be considered in the assessment, may include:

A. Relevance: What is the profile of children and families in the early intervention service provision?

o Ages the children enter the serviceo Types of impairments and/or disabilities or other risks they have in entering the

serviceo Status of the familyo Average timeframe for services

How did the family hear about the service provision? Who made the referral? Was the service model design relevant within the Ukrainian context: was this

intervention in line with national priorities, strategies and goals? To what degree has the project objectives been relevant to the priorities and needs of

women and children, particularly the most vulnerable groups of children in Ukraine?B. Effectiveness:

To what extent has the underlying theory of change been valid at this point? To what extent are the expected results chain occurring as planned?

To what extent has the design of the service model and its evolution, including type of intervention, the choice of beneficiaries, funding, and stakeholder/beneficiary involvement enabled to achieve the project’s defined objectives?

To what degree has the project contributed to removing bottlenecks hampering the improvement or expansion of early intervention services in Ukraine?

7 The Programme will be assessed and analysed according to the 10 ‘sine-qua-non’ criteria as specified in the Annex to the present ToR.

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To what extent has the resources, including human resources and funding been used effectively and contributed to or hindered the achievement of results?

Did the project result in better coverage, quality and uptake of services for children with disabilities and their families in selected sites?

To what extent has capacity building activities for service providers resulted in service quality improvement?

C. Efficiency: How cost effective are the service model activities compared to similar activities in

Ukraine? Has the initiative used resources (funds, expertise, time) in the most economical

manner to achieve the results?D. Impact:

Primary beneficiaries: What evidence is there to prove that there is increased number of children with

disabilities staying with families? To what extent have the primary beneficiaries (families with children with disabilities)

experienced increased capability and confidence to take care of children at home or increased ability to demand/seek support?

To what extent have the primary beneficiaries satisfied with the quality of services available for them up until now?

To what extent have the primary beneficiaries perceive that their unique needs and sensitivities are reflected in the established services?

To what extent have the primary beneficiaries been able to take up (use) on the available services?

To what extent has gender, human and child rights8 and capacity-building issues been taken into account in the service model and to what extent have they have contributed to achieving of the results?

To what extent has the equity gap closed in the number of children in institutions? If it has not closed, what is the likelihood that it will? If it did not close, what are the most prominent barriers for the lack of forward movement?

Local and national authorities: How has the project influenced or affected local and national authorities and the

wider community to establish early intervention services? To what extent has the service model changed (or likely to change) behaviours and

attitudes of local and national authorities as well as families of children with disabilities on taking care of children with disabilities in a family environment?

E. Sustainability: To what extent have partnership and stakeholders’ involvement at different stages of

the service model been decisive for the project in attaining its expected results up until now?

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These questions are intended to give a more specific and accessible form to the evaluation criteria and articulate the key issues of concern to stakeholders, thus optimising the focus and utility of the assessment.

INDICATORS TO BE USED IN THE ASSESSMENT:

Impact Indicators:

# Children ‘at risk’ of separation who remained with families Status of children’s health/development[1][1]:

- % children who demonstrate improved positive social-emotional skills (including social relationships)

- % children who demonstrate improved acquisition and use of knowledge and skills (including early language/ communication)

- % children who demonstrate improved use of appropriate behavior to meet their needs Status of children’s families to manage their children’s special needs:

- % families participating in early intervention services who report that early intervention services have helped the family know their rights.

- % families participating in early intervention services who report that early intervention services have helped the family effectively communicate their children’s needs.

- % families participating in early intervention services who report that early intervention services have helped the family help their children develop and learn.

Outcome Indicators:

# service providers/ # regions providing early intervention counseling (based on principles: family-centred, using multidisciplinary team, outreach occurring on regular basis and in child’s/family’s regular environment) # service providers providing home consultations, regular counseling (not in sessions)

Existence of normative provisions establishing legal/ regulatory framework for early intervention services:- Protocol/ instruction defining inter-sectoral coordination- Standards on screening, diagnostics & early intervention service

Existence of Early Intervention Professional Network:- # regions/ service providers participating in network- level of regularity of communication/ information exchange among members

Existence of higher education modules on early intervention/ Approval by Government and incorporation in academic institutions/ Ministry continued learning programmes.

Existence of communication outreach package (developed)- # regions incorporating communication outreach proposed

[1][1] Indicators were developed based on review of indicators in the following documents: New Jersey Early Intervention System, County Performance and Determination Report, NJ Dept. Health and Senior Services, Division of Family Health Services, State Fiscal Year 2010-2011;Texas Department of Assistive and Rehabilitative Services, Division for Early Childhood Intervention, Annual Performance Report, FFY 2011-2012.

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- # general population reached (is informed) through public information campaign via TV and radio channels

- # internet users mobilised to support changes for children with disabilities and their families

Limitations to the assessment – Evaluator will have access to all sources of information, available at the time of assessment, including state statistics, research and study data and data related to the service model budget and implementation. The service model clients in all sites, as representatives of the target groups, will be involved during the in-country phase of the assessment to the possible extent for interview and meetings as well as national and local stakeholders. The availability of key informants (i.e. those directly involved in the service model) for interview and clients for focus group discussions during the in-country phase of the assessment could be limited due to the summer holidays season. Other limitations for assessment related to the methodology, source of information and baseline will be identified and documented by the evaluator during the preparation phase of the assessment while developing desk review and methodology.

Data quality, reliability, and validity – All data provided for evaluator for desk – review and further analysis, are from the official sources and validated by the authorities, thus reliable. This includes state statistics, and the information bulletins of the Ministry of Health, Ministry of Social Policy, and Ministry of Educations. Ukraine’s state authorities have a wealth of statistics and data relating to the project both within the service model sites as well as nation-wide, which would be useful for the evaluator. In addition, data will be collected through the partner NGOs implementing the service model in the 2 regional sites.

ApproachWhile designing the assessment methodology, and implementing the assessment, the following approaches should be applied: i) Keep assessment procedures (e.g. interviews) brief and convenient to minimize disruptions in respondents work process; ii) Ensure that potential participants can make an informed decision about the process and duration of face to face interview; iii) Follow the principle of confidentiality; iv) Accurately and impartially analyse information and findings.

Elements of a successful modelling The service model should be assessed and analysed according to the 6 elements of modelling 9, specified as following:

1. An equity-based hypothesis (H) to describe the pathways from model to the national system of care and treatment for vulnerable to HIV groups of pregnant women, in particular drug-addicted;

2. Expected equity-based Overall Results formulated as Child Rights Realisation and which meet international HR standards, technical protocols and guidance;

3. Baseline as a basis for (H) above, including equity-increasing impact indicators;4. Set Sustainability/Exit Strategy and Termination date agreed with partners;5. Monitoring mechanisms, including for process indicators; and6. Strategies and budget to disseminate results of assessment (communication, advocacy).

9 Fulfilling these elements would be a prerequisite to a national scale up of the ‘model’.12

Cross-cutting Issues

Based on available data, the assessment will assess how the project and the strategy that it employs affect the gender equity, if there is one. The communication for social change component will be assessed as well, in order to identify to what degree (and how) communication efforts have been able to change social norms, social and cultural practices and beliefs in the area of early intervention services and stigma/discrimination against children with disabilities/developmental delays.

National Consultant

As the assessment will require obtaining data retrospectively, a national (local) consultant will be hired in each region to conduct a statistical data collection based on the agreed indicators for the assessment. This consultant can also serve to support the international consultant in obtaining additional primary information required and, if needed, support could also be considered to the international consultant in his/her field trips.

6. Tasks and Deliverables

In close consultation with the supervisor, the International Consultant will:

Work Assignments (Tasks) Deliverables # of Days1. Conduct desk review of secondary data and relevant legal

framework/policies for the national level as well as the provincial level from existing sources available within UNICEF (retrieved from project officers; method to be decided upon) and partner organisations, analyse data and define data gaps and need for data updates related to the area of early intervention services.

Summary of (desk review) data available and

information gap analysis

6 days

2. Develop methodology, framework, tools and indicators for the assessment in consultation with UNICEF programme officers and partners.

Report on methodology,

framework, tools and indicators

2 days

3. Conduct field work to collect primary data from with key stakeholders.

Interview records and summary report of field

work conducted

12 days

4. Analyse data and information collected. Analysis report 5 days

5. Present preliminary finding and analysis to UNICEF and key stakeholders.

Presentation of preliminary

finding/analysis

1 day

6. Prepare a draft version of the assessment. 1st draft of the assessment

3 days

7. Review and validate the contents with UNICEF programme officers and UNICEF partners through a participatory approach (method to be decided upon in consultation with Programme Officer).

Documentation of comments and

review

2 days

8. Produce final version of the assessment report. Final assessment report

2 days

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9. Produce summary presentation of the final assessment report. Summary presentation of final assessment

report

1 day

Total # of days: 34 days

All deliverables to be submitted to UNICEF in electronic form for feedback and assessment. The evaluator should be available for follow-up clarification and revisions of the report until its finalization.

7. Methodology

The assessment methodology should be comprised of a mixed-method assessment design, which includes of site visits and observations, face-to-face interviews of key informants, including with families with children with disabilities, service providers and stakeholders. Qualitative and quantitative components are conducted in parallel.

The assessment combines collection and analysis of quantitative data, from both surveys and secondary data, with more in depth quality methods. The principal data collection methods are a sample of focus groups selected in the service delivery sites, combined with structured interviews and direct observation of services provided at health/community facilities. The primary data will be complemented by an analysis of the extensive secondary data available from national record and other sources. Secondary data will be used as an independent source to triangulate with primary survey data in order to test for consistency.

Assessment approach and data collection to be human /child rights based and gender sensitive. Assessment methods should include analysis of both qualitative and quantitative data, including baseline indicators and established targets.

Data collected during the in-country stage of the assessment (interviews, meetings etc.) will be complemented by a desk review of all data that has been collected during the implementation of the pilots, including official sources of information, administrative records and state statistics as well as budget and records of expenditure of the project.

While the overall approach is that the assessment should be the result of a collective contribution by relevant stakeholders, project staff, decision makers, donors and beneficiaries, the Consultant shall develop the methodology based on the background resources provided to the Consultant by the UNICEF and key parties.

8. Structure of the Assessment Report

The assessment report to be produced must be compliant with the UNICEF Evaluation report standards: http://intranet.unicef.org/epp/evalsite.nsf/0/2BDF97BB3F789849852577E500680BF6/$FILE/UNEG_UNICEF%20Eval%20Report%20Standards.pdf and the GEROS Quality Assessment System

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The final pilot report produced and presented to UNICEF should be presented in the following format:

Executive SummaryDetail information on the purpose of the assessment, approaches and the process of assessment.

Assessment methodology and limitations; Overall overview of state policies and issues in early intervention, social protection and child

care sphere.An overview of the government’s current policy and priorities in the sphere of early intervention, social protection and child care, including a review of key strategic documents. An overview of the key problems identified at national and local levels and the link with local practices.

Key findings Conclusions and Recommendations (plan of follow up actions)

Based on evidence, whether or not a nation-wide scale up of the pilot approach and practice is possible and whether a scale up will effectively lead to closing of equity gaps in the area of work. Recommendations for enhancing the effectiveness of early intervention services for children with disabilities and their families within the country. Strategic, policy and implementation recommendations of how to ensure the model’s efficiency and sustainability in future and inform policy development and framework of the national scale-up of the pilot.

9. Performance indicators for evaluation of results:

The evaluation of the results will be based on:

1. Technical and professional competence (quality of the product delivered to UNICEF as indicated in part 6 above);

2. Scope of work (No. of meetings with the partners);3. Quality of work (Timely submission of the assessment draft and final report to UNICEF);4. Quantity of work (completing the assignments indicated above);5. Frequency and quality of communication with UNICEF and key partners throughout the

process.

In addition, such indicators as work relations, responsibility, and communication will be taken into account during the evaluation of the Consultant’s work.

10. Ethical Issues

All interviewees, including children, should be provided the “UNICEF Principle Guidelines for the Ethical Reporting on Children and Young People under 18 years old” and should be informed about the objectives of the analysis and how findings will be used; they also should be informed that collected data and any statement about the programme will be kept confidential and respondents will not be named or identified in the reports with regard to their statements.

All interviewees should agree without coercion to take part in the analysis and be given the option to withdraw or not to participate at any time during the process. All gathered data should be

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confidential and names of individuals deleted from the data and replaced by codes in the analysis notes.

Ownership of all data/information/findings gathered, databases and analysis prepared for the analysis lies with UNICEF. The use of the data/information/findings for publication or any other presentation or sharing can only be made after agreement with UNICEF.

11. Qualifications/specialised knowledge/experience required to complete the task

1. At least a Master’s Degree in public health, sociology or other relevant discipline;2. At least 7 years of experience of disability, early childhood development, and social policy

issues at the national level with government departments, development partners inter alia; 3. Solid and demonstrated knowledge and understanding of early intervention services and

approach, as well as social protection thematic areas;4. Specific knowledge of issues related to children with disabilities and/or developmental delays;5. Extensive experience in conducting analytical surveys and sociological assessments or

evaluations;6. Demonstrated ability to conduct qualitative and quantitative analysis/evaluation;7. Demonstrated knowledge and understanding of issues related to disability as defined in the

UNCRPD;8. Proven experience of managing multiple, complex tasks being undertaken concurrently; 9. Proven experience of conducting key informant interviews and focus group discussions;10. Proven ability to analyse, interpret and synthesise information from a number of sources;11. Proven ability to work in a team;12. Excellent and proven communication skills;13. Demonstrated experience with completing assessments, reviews, and evaluations;14. Proven and demonstrated experience in writing analytical reports.15. Excellent and proven command of English. Command of Ukrainian and/or Russian would be

an asset.

12. Definition of supervision arrangements

Consultants will be supervised by the Child Protection Specialist, UNICEF Ukraine and work in close coordination with the UNICEF Ukraine Monitoring and Evaluation Specialist.

13. Description of official travel involved

Travels are envisaged to the 2 sites within the in-country Programme assessment mission. The local travel will be paid separately. No travel shall be undertaken prior to completing the UN Basic and Advanced Security in the Field Courses as well as Landmines and Explosive Remnants of War Safety Training. The links to the electronic courses will be sent to the consultant separately.

14. UNICEF recourse in the case of unsatisfactory performance

In the event of unsatisfactory performance, UNICEF will terminate the Agreement. In case of partially satisfactory performance, such as serious delays causing the negative impact in meeting the

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programme objectives, low quality or insufficient depth and/or scope of the assessment completion, UNICEF will decrease the payment by the range from 30 to 50%.

15. Support provided by UNICEF

Day-to-day support for the assignment will be provided by the Child Protection Specialist and will include relevant information sharing via e-mail, briefing and de-briefing sessions, and facilitation of the evaluator’s meetings with UNICEF counterparts when necessary.

The deadline for submission of applications is 27 November 2014.Only short-listed candidates will be contacted.

Applicants that fulfil the above requirements are requested to complete the United Nations Personal History Form (P. 11) available at www.unicef.org/employ and submit it together with a CV and a cover letter describing your professional interests in working for UNICEF.

Applications should be sent to:UNICEF Office, 1, Klovskiy Uzviz, Kyiv, Ukraine

Fax No. 380-44-230-2506E-mail: recruitment_kiev@unicef.org (Please indicate ‘Assessment of

the Early Intervention Services10 in Ukraine’ in the subject of your application)

UNICEF does not charge any fees or request money from candidates at any stage of the selection process, nor does it concern itself with bank account details of applicants. Requests of this nature allegedly made on behalf of UNICEF are fraudulent and should be disregarded.

Annex 1 Theory of Change on Early Intervention

Early Intervention in UkraineTheory of Change

1. Problem and ContextProblem Statement:10 In this research, “early intervention,” is meant as a system of coordinated services that promotes the child's age-appropriate growth and development and supports families during the critical early years (from birth to 6 years). The age for intervention can vary from 0-3 years to 6 years, but a critical part is starting intervention early and before 3 years. Development of these services sometimes has been targeted to children with developmental disabilities or delays, but early intervention is not limited to children with these disabilities. Early intervention services often address needs of young children who have been victims of, or who are at high risk for child abuse and/or neglect, or where the child or family faces other vulnerabilities to enabling development growth.

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Children with disabilities are one of the most vulnerable child groups in Ukraine. Of over 8 million children living in Ukraine, 168,280 children are registered with disabilities11, with more than 40,000 of these children living in institutions12. Of those children with disabilities, it is estimated that in 2012 there were more than 12,000 children under 3 years with disabilities (83.2 per 10,000 child population) and more than 33,000 children between 3-6 years (179.6 per 10,000 child population). These numbers don’t even start to consider those children who have special needs or are at risk of disabilities but are not addressed due to their lack of “status” of a disability.

Global research has proven the critical role that caregivers play in developing children’s social and cognitive abilities13, particularly in early years when the plasticity of the mind provides the greatest opportunities for development.14 Early attunement and empathy shared between child and parent play key roles in the child’s overall physical and psychological development..

Frequently, families who give birth to children with special needs or disabilities are significantly affected by the situation. Many families feel isolated or depressed15 which can prevent them from being able to respond to their children’s heightened needs.16 Studies have shown that maternal depression is a prime factor in the pathway to behavior problems for many children, even leading to limitations in brain development.17 External vulnerabilities of families (e.g. poverty, dependencies, or violence) can also be factors that inhibit their ability to respond to their children’s development needs, especially when the children are at risk of developmental delays or children at risk of or with disabilities. Heightened stress and psychological distress due to Ukraine’s current crisis may further limit parents’ and families’ abilities to respond to their children’s needs and subsequently their ability to be socially integrated.

At the same time, children born at biological risk or with established disability have less resilience to parents’ reduced abilities to provide stimulus or interaction, leading to potential deficits in development18. At times, these delays or disabilities are even hidden and children are fully dependent on their parents to recognize the first signs of special care needs.

While the intervention needed is to establish or restore parents’ interaction with their children, the traditional response in Ukraine has been application of an outdated medical approach to addressing delays or disabilities. Existing responses have focused on medical needs of children with disabilities

11 Data as of the beginning of 2013. Figures for children with disabilities by region from State Statistical Service, СОЦІАЛЬНИЙ ЗАХИСТ НАСЕЛЕННЯ УКРАЇНИ, 2014. Available via http://www.zp.ukrstat.gov.ua/index.php?option=com_content&view=category&layout=blog&id=95&Itemid=100034 .12 According to the Presidential Commissioner for Children’s Rights, in 2013 there were 41,700 children living in special boarding schools for children with disabilities. Presidential Commissioner for Children’s Rights, Protection of the Rights of the Child in Ukraine, 2014, p. 99.13 Why Early Intervention Works, A Systems Perspective, Michael J. Guralnick, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3083071/14 Investing in Our Children: What We Know and Don’t Know About the Costs and Benefits of Early Childhood Interventions, Chapter 1, p. 2.15 Research of CEECIS countries showed that families often feel ashamed about having a child with disabilities and are frequently told to forget them and continue with their lives (Burhanova 2004), FAMILY MATTERS: A Study of Institutional Child Care in CEE & FSU, Every Child, p. 22. http://p-ced.com/reference/Family_Matters_summary.pdf16 Investing in Our Children: What We Know and Don’t Know About the Costs and Benefits of Early Childhood Interventions, Chapter 2, p.63. 17 Ibid, p.65.18 Why Early Intervention Works, A Systems Perspective, Michael J. Guralnick, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3083071/

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with a view to “cure” the child rather than enabling the environment for the child and his/her family. Focus has been on “diagnosing” the child’s ‘problems’, branding the child with a disability and establishing an environment where the response is in a separate and isolated, specialized medical response. Under these conditions, medical services address only the needs of the child and leave parents and families completely outside the response. Furthermore, this medical approach prevents “non-doctors” (e.g. parents) from challenging the response as “only doctors can diagnosis.”

This situation is complicated by the fact that often there are only limited social services available to support these families. Responses are often fragmented19 with social aspects of a child’s and families’ needs frequently not being addressed or segregated from a child’s medical support. These conditions leave the onus on parents to search for different specialists to address varying needs of their children20 and do not allow for synergy among specialists’ interventions. Placing such responsibilities on parents is particularly difficult as in most cases parents do not participate in rehabilitation processes for their children, leaving them uncertain about how to identify or address their children’s special needs.

At the same time, medical professionals still frequently advise parents with children having more severe disabilities to place them at birth into institutional care21, either proposing that they are “still young enough” to have other children or proposing residential care for “rehabilitation”.22 European research on the consequences of institutional care for children 0-4 years revealed that children placed in residential care before 6 months experience long-term developmental delays and difficulties with social behaviour and attachments may persist, leading to a greater chance of antisocial behaviour, delinquency and mental health problems. 23 These risks of harm from institutional care exist for any child; for those children at risk of or with disabilities or developmental delays, the consequences can be even more dire as they have limited abilities to compensate for limited stimuli.

Context for Intervention:To address these bottlenecks, UNICEF believes that there must be a paradigm shift where building families’ nurturing resources is at the center of responses. Responses need to have a comprehensive and inter-sectoral coordination approach, addressing needs of both the child and the parents.

For young children, early intervention principles address these challenges. Specifically, early intervention is a system of coordinated services that advances the child's age-appropriate growth and development and supports families during the critical early years (from birth to 6 years). Early intervention services require multidisciplinary, inter-sectoral coordination, where a team of different

19 Mapping of Ukraine rehabilitation programmes for young children was described as “cabinet” approaches, where parents had to go to individual specialists who addressed issues and then referred to other offices. UNICEF consultancy by Natalia Dobrova-Krol, 2013.20 Case study of parent from Sevastopol Center, UNICEF Mapping Exercise, “Early Intervention: Key Aspects, international and Ukrainian Experience,” (2013).21 Research by Dr. Kevin Browne in 2003 showed that the reason for children under 3 years being in residential care was disabilities for 4% of those institutionalized children in EU member state countries, whereas 23% in central and eastern European countries participating in the research. http://www.unicef.org/ceecis/02-5_Kebin_Browne_UK_ENG.ppt22 Parent testimony from NGO, Dzherelo, Lviv, Ukraine, Building Futures: The Dzherelo Children's Rehabilitation Centre in Lviv, Ukraine, https://www.youtube.com/watch?v=Qwkmylzs5XI.23 Presentation by Dr. Kevin Browne, “Transforming services for children without parents: A decade of EU Daphne projects in collaboration with the WHO Regional Office for Europe,” slide 15, http://www.crin.org/docs/The_Risk_of_Harm.pdf.

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specialists24 works together with the child and the parents to develop an individual plan. Parents are key partners in developing solutions for their children, enabling them to build their understanding and skills to care for their children’s special needs. This approach, in turn, contributes to decrease the risk of abandonment or placement in residential care for rehabilitation purposes as parents have alternatives in their communities and see ways to support their children themselves. Global research has found early intervention to be effective25 and cost efficient26, as it can reduce the long-term effects of some disabilities and also decrease the overall cost of providing care to children with disabilities, even considering the client cost for each alternate care service.

Models of early intervention services in Ukraine have been developing among NGO providers for more than 10 years. Through these efforts, there is an “informal” early intervention network with NGO and state providers from more than 8 regions of Ukraine’s 27. These initiatives are at a point where assessment of their impacts for children and families and exploration of how different venues (e.g. NGOs, baby homes, medical clinics and rehabilitation service centers) could be used to disseminate early intervention practices under existing budgetary resources could provide the evidence framework for active advocacy for family-oriented service approaches within the Government’s on-going reform processes.

In particular, two NGO partners from Lviv and Kharkiv within this network have services which have been developed based on international early intervention standards27, striving to have parents as key partners in providing rehabilitation and habilitation of young children with development and health impairments while normalizing families’ lifestyles and working toward social integration and inclusion. Research over a ten year period (2003-2012), examining the effect of early intervention services for 363 children28 attending the Kharkiv Institute of Early Intervention, revealed a 100% improvement for children with Down Syndrome, 95.05% improvements for children with central nervous system impairments and 97.24% improvement for children with autistic spectrum.

Political priorities to enhance rehabilitation responses for young children and transform Ukraine’s baby homes provide a ripe environment for advocacy of family-oriented responses such as early intervention practices. Specifically, Ukraine committed to move from institutional care to family-based care, including for children with disabilities (Order of the Ministry of Health #70 of 02.02.2010 On Activities to Develop Baby Homes) and enhancement of rehabilitation services for children with disabilities modeling services in Kharkiv was highlighted as a priority in the presidential social initiatives as stated at a Cabinet of Ministers meeting (27 February 2013).

24 Specialist teams will vary upon the specific needs of a child and their families, but usually an “early intervention” team’ will comprise at least a physician, speech therapist, physical therapist and psychologist.25 An American longitudinal research was conducted to evaluate the effect of early intervention services. The research was conducted over a 10-year period and tracked the progress of 2,586 children with development impairments or at risk of receiving impairments. At the time of leaving the early intervention services, 54-62% of the children in the study did not have any delays or diversions from the “norm” in communication skills, reading or counting. (US Department of Education, 2011, Early Childhood Outcomes Center, 2011.) 26 Research by Barrett (2000) in the US showed economic savings from $30,000 to $100,000 for each child that went through early intervention services or up to $48.3 billion at the national level. Research by James Heckman (2006) also showed that return on investment in early intervention was 6 to 7 cents for every dollar invested.27 The main target group for early intervention in Ukraine is children with disabilities, development delays, or special needs. While it is recognized by Ukrainian colleagues that these other groups could benefit from such services, the outreach is still largely to children at risk of or with disabilities or development delays.28 The group comprised 242 children with development impairments, and 120 with development delays. Research by Anna Kukuruza, PhD thesis, ….

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2. Hypothesis:This theory of change focuses on strengthening parents’ capacities to support their young children’s development needs, including caring for parents’ own needs to fill their caregiver role. Parents’ ability to provide stimuli and support to their children’s development is particularly critical for children with vulnerabilities, such as at risk of or with disabilities or development delays.

Review of global research shows that early intervention principles and programmes advance family-oriented services that build the families’ resources and in turn these interventions enable families to respond to children’s specific and often extensive developmental needs.

Furthermore, in Ukraine responses to family vulnerabilities, including disabilities or development delays, have traditionally been outside of the families in residential care facilities rather than community-based services with the child remaining with the families.

In this context, the hypothesis of this theory of change is that:

Provision of enhanced early intervention services for young children with disabilities or at risk of disabilities and their families, access to and uptake of such services will: Increase children’s development capacity and family’s coping mechanisms, enabling greater social inclusion in their

communities; and Reduce the number of children with disabilities being placed in residential care (i.e. decreasing the “inflow” of

children into baby homes)

3. Expected Goals: Families with children at risk of or with disabilities or development delays are able to care for their children’s specific needs and to cope with challenges faced due to their children’s disabilities or vulnerabilities within the families through their access to family-oriented, early intervention support and services in their communities.

4. Results Framework:4.1 Expected Impacts:

Specific development needs of children with disabilities or development delays are met by their families, resulting in an increase in these children’s overall development and greater integration into their communities and a reduction of these children being placed in residential care. Young children with disabilities or development delays and their families have access to early intervention

services that are consistent throughout Ukraine and are conducted within their communities, including in more rural or remote areas.

Families with children with severe/complex disabilities gain the support to care for their children rather than send them to residential care for rehabilitation.

Key assumptions behind the outcomes that lead to the impact are:- Early intervention responses, which are family-oriented, build parents’ skills to care for their children’s special

needs o Key risk: The key risk is that limited capacity of professionals may not effectively involve parents as active

partners in solutions and thus not build parents’ caring skills.o Key mitigation measures: Information outreach to parents will inform them about the principles of early

intervention and will provide them with knowledge about how they can participate. In this way, parents will become capable to demand the services needed and advocate for their active role in the process.

- Parents will care for their children with disabilities or development delays at home if they have access to support and services. UNICEF assumes that if parents have the skills to care for their children’s special needs and receive

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the necessary and effective support, then they will keep their child in the family rather than abandoning them or placing them in residential care for rehabilitation purposes.o Key risk: Families requiring early intervention services can be as a result of vulnerabilities within the family,

separate from children’s disabilities or development delays. In this context, parents’ own vulnerabilities may inhibit them from seeing their children’s specific needs or being motivated to address their children’s specific needs in the best manner, i.e. deciding that residential care is the “easier” response.

o Key mitigation measures: A strong focus on interdependent needs of children and parents to establish or re-build parent-child relationships should provide the means to address parents’ own vulnerabilities.

4.2 Expected Outcomes:

Early intervention services are systematized through normative provisions, following international good practices (legal provisions, protocol/ instructions for inter-sectoral collaboration and referral mechanisms; and standard(s) for early intervention service)

Community-based, child-centred and family-focused early intervention services are developed and strengthened, with services provided as close to child’s routine environment as possible.

Parents’, families’, professionals’, and the general public’s supportive behavior towards children with disabilities and development delays as well as knowledge on available early intervention services are increased.

Key assumptions behind the outputs that lead to the outcomes are: - Rehabilitation responses for young children and transformation of Ukraine’s baby homes will remain a political

priorityo Key risk: While the reform planned in the social service and health sectors continues, competing priorities

related to programme and financial engagements could arise due to Ukraine’s difficult economic conditions and limited local budgetary resources for service delivery. The fact that funding for children with disabilities comes from varying budget lines could also complicate establishment of a comprehensive, consolidated service response.

o Key mitigation measures: Efforts will focus on generating evidence about the social and individual benefits of early intervention practices, while at the same time increasing participation of parents and family members in the policy dialogue so they can advocate for early intervention practices.

- Service providers are willing to shift from a medical to social response, but require the know how for taking specific steps: Dialogue among professionals reflects their understanding about the need for more inclusive rehabilitation responses for children with disabilities and special needs. There also is awareness among professionals about the negative impacts of institutionalization of children, particularly young children.o Key risk: Early intervention services stretch across several sectors (social policy, health and education).

There is the risk that coordinated responses required across the sectors to make changes may be more difficult than planned, as professionals may have varying capacity or motivation to conduct such services.

o Key mitigation measures: UNICEF is working with national government partners to create policy changes and ensure mutual buy-in. At the same time, multidisciplinary training teams will build understanding among professionals from different sectors, seeing how their coordination will produce more effective responses for children.

4.3 Expected Outputs:

Existing community-services based on early intervention principles through different agencies are documented and strengthened to be applied in advocating for replication of the practice across Ukraine.

Recommendations for inter-sectoral coordination referrals, management and quality control mechanisms for early intervention services for children with disabilities and development delays are established and submitted to the government for approval.

Frontline professionals’ knowledge about early intervention services and capacity to provide immediate information support and referral for vulnerable women and families for more extensive rehabilitation services are enhanced.

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Early intervention network is strengthened, providing opportunities for exchange among professionals and parents on good practices, mentoring, and setting professional “standards”/criteria.

Early intervention approaches are integrated into higher education programmes for relevant professionals. Outreach responses using early intervention practices are increased among families/children living in more

rural/remote areas and those being most vulnerable.

Communication outreach packages are developed and tested in 2-3 regions and shared across other regions for replication, addressing stigma towards children with disabilities and enhancing families’ knowledge about early intervention services (to increase demand for services).

Key assumptions behind the activities that lead to the outputs are: - Establishing a Ukrainian evidence-platform for early intervention will serve as the tipping factor for taking the

approach to scale: UNICEF’s experiences have shown that demonstrating good practices can serve as motivating factors for government partners to initiate reform. This example was seen in the Ministries of Finance and Social Policy’s agreement to work with UNICEF on development of a new funding approach for social services after participating in a study tour to review Berlin’s social service system.o Key risk: The risk is that different stakeholders have conflicting interests, causing resistance to a shift from

the current medical to a social approach for disability issues. Vested interests and resources held among the different sectors could be jeopardized with the proposed changes, creating resistance to new approaches.

o Key mitigation measures: The evidence-base will be grounded in pragmatic assessments involving cost analysis of different alternatives as well as rigorous documentation of results and impacts for key beneficiaries.

- Building professionals’ capacity through systematic exchange of knowledge on early intervention approaches will enable them to develop effective early intervention services. o Key risk: The risk is that without continued funding or technical support to capacitate the professionals, they

may not be able to implement the knowledge gained/transferred. o Key mitigation measures: Extensive involvement and advocacy with government partners provide the

means for a more systemic and sustainable response, reducing the risks of lack of resources.

- Raising awareness through enhanced information outreach will reduce stigma and encourage parents to demand early intervention services. The perception is that stigma and discrimination exist due to lack of knowledge and understanding.o Key risks: A key risk is that information will not be believed by parents or the fear of “losing” the little they

have will be too great to change their behavior. Discrimination and stigma towards families with vulnerabilities as well as towards children with disabilities may even persuade such parents to believe that residential care is better for their child.Another risk is that behavioral change may take a long time for it to happen, limiting abilities to advance early intervention services in a systematic manner.

o Key mitigation measures: Information outreach to address stigma and discrimination will be a key component targeted in responses of this theory of change.

5. Activities Required:This theory of change contributes to UNICEF’s 2012-2016 programme indicator to strive towards a 25% reduction in the number of children in institutions due to disability, by working on a decrease in children’s entrance (“inflow”) to residential care facilities (baby homes). A key priority for UNICEF’s country programme is advancing system responses to enable children to be protected and cared for in their families, with a particular focus on enhancing the opportunities for the most vulnerable child groups such as children with developmental delays or disabilities.

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Within this theory of change, UNICEF’s role is to generate evidence that contributes to policy dialogue, convening policy makers and ministry colleagues with civil society partners and parents of children with special needs. Building on the existing promising early intervention practices in Ukraine (particularly in Kharkiv and Lviv), UNICEF is assessing the impacts and costs of these services to explore opportunities for harnessing their lessons learned for replication across Ukraine.

UNICEF also supports integration and cross-sectoral linkages among different government levels as well as across sectors, which is critical to the early intervention approach. The process involves enhancing both national and regional partners’ capacities to advance early intervention practices. Information exchange and direction from the national level to the regions is also required to establish a mutual understanding and commitment to the new approaches, for which there may initially be some resistance.

Building support for early intervention practices requires changes both from the supply side, involving policy-makers and providers, and the demand side, by parents and community members. In this context, UNICEF is working to also focus on social change communication targeted at communities to better understand disabilities and the importance that early intervention approaches can play in young children’s development. This work will be conducted closely with partners such the National Assembly of People with Disabilities.

Recognizing the need for capacity development to enable lessons from existing promising practices to be disseminated broadly across different service providers and specialists in Ukraine, UNICEF partners with national and international civil society organizations who have taken the lead in building capacity among colleagues in Ukraine. UNICEF’s role is to support civil society colleagues in advocating with government partners and academic institutions for established good practices to be incorporated systematically into education programmes such as continued learning programmes of the Ministries of Education and Social Policy, as well as programmes of higher education institutions.

It is recognized that the systemic changes described in this theory of change are ambitious and significant, requiring time to be developed and accepted by communities. The timeframe for this theory of change is at least 5 to 7 years. However, assessment of progress will be conducted at the end of UNICEF’s current programme cycle to determine whether adjustments are needed.

By the end of UNICEF’s current programme cycle (end 2016), UNICEF strives to have established, collaboratively with international and national civil society partners and government colleagues, an evidence-based platform for early intervention practices, with an action plan for development of normative provisions for early intervention and objectives for dissemination of the practices submitted to the government.

Specifically, at the end of 2016 the following results are expected: Early intervention practices among different service providers (NGO services providers, baby homes, etc.) are

assessed, documented and disseminated. These services are assessed in comparison to more “traditional” practices of baby homes and socio-rehabilitation centers for young children to reflect the added value of the innovation of early intervention approach.

Action plan is established for development of normative provisions for early intervention, with a clear understanding of what legislative/ regulatory provisions are required and when they should be drafted.

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Capacity building plans and approaches are documented in modules and agreed among early intervention providers with plans set for integration into education programmes, with a goal to strive for expansion of early intervention practices into at least 2 new regions.

Package of communication materials, promoting understanding about disability issues and early intervention practices, are established and shared among network of early intervention service providers and government partners.

Under these conditions, the main activities will include: Data collection & knowledge management : Working with Lviv and Kharkiv colleagues, UNICEF will evaluate the

impacts and results of and costs for early intervention services for children with disabilities or development delays and their families. Assessment will review early intervention approaches established in NGOs, baby homes and agencies from other sectors in comparison to more “traditional” services for children with development delays or disabilities. Establishing an evidence base within Ukraine’s context will strengthen UNICEF’s advocacy stance with government partners for systemization and replication of the early intervention practice.

Legal and regulatory development: Based on the proven success of early intervention services, UNICEF will convene service providers (NGO and state agencies) and government colleagues to systematize early intervention practices. Establishing normative provisions will provide the framework to enable early intervention’s multidisciplinary approach, bringing specialists from different sectors to work together rather than in separate silo-responses.

Capacity building: While early intervention services are expanding, colleagues continue to have significant needs to develop their professional skills and understanding about working in a family-centered, multidisciplinary approach. Good knowledge exists among Ukrainian experts, but there must be the opportunities for exchange of experiences and coaching or supervision support by experienced early intervention service providers for colleagues newer to the early intervention approaches. Working with international and Ukrainian early intervention partners, UNICEF will promote training approaches and information exchanges to be incorporated in a systematic way to government continued learning programmes and higher education curricula.

Communication outreach : Communication initiatives will include “Communication for Social Change” interventions and partnership building among families and communities. Communication outreach will focus on behaviour change, challenging discriminatory responses from professionals and general public towards children with disabilities. Outreach will also target families’ and communities’ awareness raising about early intervention services and social mobilization.

Quality assurance : Development of quality mechanisms on the service itself, such as a service standard and potential accreditation or criteria for early intervention service providers, and on education programmes will be critical to ensure that responses are truly in the spirit of early intervention approaches -- i.e. a multidisciplinary approach, family-oriented, and interventions conducted on a regular basis within the daily settings of children and their families.

Hypothesis: Provision of enhanced early intervention services for young children with disabilities or at risk of disabilities and their families, access to and uptake of such services will: (1) increase children’s development capacity and family’s coping mechanisms, enabling greater social inclusion in their communities; and (2) reduce the number of children with disabilities being placed in residential care (i.e. decreasing the “inflow” of children into baby homes).

Programme Goal: Families with children at risk of or with disabilities or development delays are able to care for their children’s specific needs and to cope with challenges faced due to their children’s disabilities or vulnerabilities within the families through their access to family-oriented, early intervention support and services in their communities.

Activity Output Outcome Underlying

AssumptiTimefram

e for Outputs

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onsShort-term Interventions:

1.1 Survey of international good practices on early intervention services is developed, sharing with key stakeholders.

1.2 Mapping of existing EI services/evolving practices in Ukraine is conducted through different agencies (NGOs, baby homes, polyclinics & social-rehabilitation centers).

1.3 Recommendations are developed for action plan to advance EI service in Ukraine, based on mapping, to MOH/ inter-sectoral working group.

Existing community-services based on early intervention principles through different agencies are documented and strengthened to be applied in advocating for replication of the practice across Ukraine:

- Concept on early intervention clearly defines the “standard” for early intervention services in Ukraine, with agreement among key stakeholders.

- Evidence-based data on effectiveness and efficiency of EI services in Ukraine is established for advocacy of policy provisions.

Early intervention services are systematized through normative provisions, following international good practices: - legal

provisions (e.g. rights, benefits and guarantees) to allow different specialists (from different sectors) to work together in one facility

- Protocol/ instructions for inter-sectoral collaboration and referral mechanisms

- Clear standard(s) for early intervention service exists, defining what specialists to be involved and how to interact

Documentation of existing and/or services, practices, strategies, approaches, and costing are pe-requisites for buy-in by government partners and opportunities for further dissemination.

End 2014

Short to Mid-term Interventions:

2.1 Indicators for monitoring results (impact) from EI services are agreed among key practitioners.

2.2 System is set up for monitoring agreed indicators.

2.3 Impacts/ outcomes of EI services is assessed in 2-3 of the more advanced regions.

2.4 Costing of early intervention services is conducted in 2-3 of the more advanced regions.

End 2015

Mid-term Interventions:

3.1 Dialogue across sectors and state/NGO partners on the need for inter-sectoral coordination for referral, provision of services & budgeting of services is facilitated (shared across sectors) in the form of roundtables, study tours, bilateral meetings, etc.

3.2 Together with colleagues from different sectors/ state and

Recommendations for policy framework for early intervention services for children with disabilities and development delays is established and submitted to government.

Legislative development and operational coordination will enable efficient and effective implementation of multi-disciplinary and inter-sectoral early

End 2016: Agreed action plan for policy development

End 2018: establishment of policy/ normative provisions - standard,

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NGO partners normative provisions are drafted to systematize early intervention services: Protocols/instructions or

methodological recommendations for coordination among professional from different sectors (e.g. ability for doctor to be in EI team, psychologist to be polyclinic staff)

3.3 Establish working group among leading EI service providers and state agencies to define key quality assurance mechanisms for service implementation:- service standard(s) and

assessment tools: screening, diagnosing, implementing service (May need to be two standards, depending on whether there will need to be two linking standards among MOH &MOSP, or whether there can be an inter-sectoral standard)

- components for control mechanisms and licensing of early intervention programmes, founded on

3.4 Conduct advocacy/policy dialogue at national level with government partners & key academic and research institutes

intervention services.

protocol/instruction.

Mid-term Interventions:

Build knowledge and capacity of frontline professionals for referrals:

1.1 Conduct roundtables, seminars and information exchange on: importance of children

staying with families/ negative effects of

Frontline professionals’ knowledge about early intervention services and capacity to provide immediate information support and referral for

Community-based, child-centred and family-focused early intervention services are developed and strengthened, with services provided as

Enhanced capacity of existing service providers to conduct early intervention services will enable increased access for

End 2018

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institutionalization; Ways to consult

mothers/families to identify problems and responses

role of early intervention services in enabling children to stay with families

(Potential professionals include: neonatologists, social workers, Psycho-medico-pedagogical commission specialists, pre-school specialists, NGO and parent peer groups)

1.2 Develop and test information materials for: professionals to better

understand how to consult with vulnerable families and where/how to make referrals

mothers/families – on actions to obtain support/ contacts for early intervention services and other service outreach

(e.g. brochures, “red flag” cards for signals for support and reference numbers, guides on how to consult/ address vulnerable families’ needs/concerns, mapping of the referral process)

vulnerable women and families for more extensive rehabilitation services are enhanced.

close to child’s routine environment as possible

services by the target population.

Mid- to Long-term Interventions:EI Professional Network for exchange of information and quality assurance:2.1 Dialogue among EI service

providers is facilitated through roundtables, skype discussions, questionnaires to define needs and opportunities for exchange of information, coaching

2.2 Objectives, activities, membership requirements and secretariat for the network are defined and agreed among EI community

2.3 Information to donors,

Early intervention network is strengthened, providing opportunities for exchange among professionals and parents on good practices, mentoring, and setting professional “standards”/criteria.

End 2016: - identification of secretariat for network in more “formalized” manner

- Action plan established for development of network to advance information exchange

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international organizations, private sector is coordinated to leverage funding opportunities and other resources for network (association).

2.4 A coordination forum with participation of EI network is established among donors, international organizations, private sector interested in advancing early intervention to ensure synergy of actions and avoidance of duplication.

(Early intervention practices are developing across different agencies – both state and non-governmental.)

among members

End 2018-2019:- Tools for information exchange/mentoring among network members are functioning

End 2019:- Professional criteria for conducting early intervention services is drafted and agreed among members

Mid- to Long-term Interventions:Higher Education Programme on EI Approaches:3.1 Working group of existing EI

service providers to define key criteria to be included in EI education programme is established.

3.2 Review existing higher education programmes and convene academic/research colleagues to identify how EI modules could be included.

3.3 Develop EI modules for higher education/ continued-learning programmes (including technical assistance on international standards; other countries’ EI training practices).

3.4 Advocate among ministry colleagues (MOES, MOH, MOSP) and academy higher education provosts/ directors

Early intervention approaches are integrated into higher education programmes for relevant professionals. (e.g. pediatricians, psychologists, speech therapists, physical therapists, social workers)

End-2016:- Assessment of EI training approaches/ exchanges required

End-2018:- Development of EI modules, with advocacy to higher education facilities & government partners

End-2019-2020: Goal for approval of EI modules into programmes

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to incorporate EI modules in existing programmes.

Mid- to Long-term Interventions:

Outreach to more remote/vulnerable families:

4.1 Conduct assessment of early intervention needs among rural areas and specific home visit needs of most vulnerable children/families, reviewing effects of existing practices (particularly home visits)

4.2 Review home visit practices in Ukraine, examining the results obtained, specialists involved and contribution of this component to overall early intervention responses

4.3 Pilot mobile team outreach, using different available resources including NGO services, baby home experts and potentially other EI experts.

Outreach for rural areas where specialists aren’t located or for children with severe/complex disabilities requiring high tech diagnosis etc.

4.4 Establish working group among specialists from different agencies – baby homes, NGO service providers, social rehabilitation centers, and MOH colleagues to review assessment findings and outreach practices proposed/developed to enhance access and to develop recommendations for normative provisions and practices among agencies/sectors that will expand access, with establishment of action plan agreed with government partners.

Outreach responses using early intervention practices are increased among families/children living in more rural/remote areas and those being most vulnerable: Existing EI

home visiting practices reviewed and opportunities defined for strengthening and replication

EI mobile team practice piloted and documented,

End-2016:Assessments of situation for needs of rural areas/remote areas for EI & home visiting is conducted.

End 2018:Pilots of mobile team outreach/ home visits are tested and documented.

End 2019-2020:Recommendations for normative provisions to expand mobile team work

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Mid-term Interventions:1.1 Develop baseline study on

perceptions of public and professionals’ towards children with disabilities/ developmental delays; and on knowledge of parents with disabilities/developmental delays regarding early intervention.

1.2 Establish communication outreach materials and campaign

1.3 Pilot (in 2-3 regions) information outreach to:

- families and community professionals to break down stigma towards children with disabilities/ development delays and dispel the belief that children with disabilities can only be properly cared for in specialised institutions

- families know about the value of early intervention services, importance of family participation in process

1.4 Evaluate effect of campaign, comparing findings from initial baseline and evaluation at completion of campaign

1.5 Document campaign lessons and materials, establishing a communications package that would enable dissemination of campaign to other regions

Communication outreach packages are developed and tested in 2-3 regions and shared across other regions for replication, with the goals to:- address

stigma towards children with disabilities

- enhance families’ knowledge about early intervention services (to increase demand for services)

Parents’, families’, professionals’, and the general public’s supportive behavior towards children with disabilities and development delays as well as knowledge on available early intervention services are increased:

- Families with children with disabilities know about early intervention services and feel supported by their communities.

- General public has greater solidarity towards children with disabilities and families, supporting initiatives for children’s greater social inclusion.

Behavioral change among families, professionals, and general public will enable greater access to and uptake of services.

End 2015:

Baseline study on: perceptions of public towards disability; knowledge of parents regarding EI

End 2016:

Pilot information outreach with information package is developed, tested and evaluated in at least 2 regions

End 2018:

Roll-out of more extensive information campaign awareness

Evaluation of campaign results

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6. Partnerships:The work will involve a coordinated circle of partners: government; civil society organizations/think tanks; and the general public, including families and children themselves, the private sector and media. Partnerships will be advanced at both the national level to advocate for the systematizing of early intervention practices and at regional/local levels exploring specific lessons learned from existing service providers for dissemination.

Ministry partners are key partners as they are ultimately responsible for developing the policy framework of service responses for young children with disabilities. The key ministries include Ministry of Health, Ministry of Social Policy, Ministry of Education and Science.

Parliamentarians are important stakeholders in setting the legislative foundation for early intervention services. There is a Committee on disabilities Issues within the Parliament, with which UNICEF collaborates in advocacy.

Early Intervention Service Providers: Early intervention approaches have developed across different sectors (e.g. NGOs, MOH’s polyclinics and baby homes, MOSP’s social rehabilitation centres), based on capacities and available resources. Promotion of early intervention practices across diverse agencies should be encouraged particularly as services must be based within available resources, given Ukraine’s tight fiscal conditions.o Civil society organizations: NGO early intervention service providers play a critical role in setting the

standards for policies to address early intervention services. NGO colleagues, such as Dzerelo and Institute for Early Intervention, provide the examples of successful early intervention responses within Ukraine’s context. Documenting and costing these two experiences will provide the proof that early intervention works for children with disabilities and development delays and their families in Ukraine. Furthermore, an informal network of early intervention providers exists who can serve as critical resources for coaching on and transmitting knowledge about early intervention practices to other colleagues and regions to ensure that the service can exist throughout Ukraine. Another key NGO partner is the National Assembly of People with Disabilities, which reaches across disability organisations and parent groups on disabilities throughout Ukraine.

o State agencies as early intervention providers: Colleagues developing early intervention services often have collaborated with NGO colleagues from Dzerelo and Institute of Early Intervention, such as the rehabilitation center in Sevastopol or the Kharkiv Oblast specialized baby home #1. Experiences of the Kharkiv Oblast baby home portray approaches that can be used to shift from isolating, residential care to family support options within communities. Strategies to expand early intervention practices need to be main flexible, exploring different options for use of resources and ability to tap into specialists such as in baby home facilities. In the case of the Kharkiv baby home, the specialists have started to serve as important resources for development of “mobile teams” to reach more rural areas where specialists and advanced equipment are not available.

Parents groups for children with disabilities play a critical role to challenge the system to advance and better respond to the particular needs of their children. Early intervention approaches must be family-centred, where parents have an active role in conducting the services. In this way, these groups play a critical role in shaping the service and providing feedback to professionals on how to enhance responses.

International NGOs, like Soft Tullip, and other international organizations (e.g. OSI, World Bank) are also key partners in advancing systematizing and expansion of early intervention services in Ukraine.

Think tanks and academic institutions, such as National Academy of Pediatricians and the National Medical Academy of Postgraduate Education in the name of Shupyk, are important partners to advance policy development as well as early intervention approaches within higher education programmes for professionals.

Active participation of the wider general public will also be required to build greater solidarity for children with disabilities and their families to be active members in their communities, receiving services and participating in mainstream activities.

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7. Monitoring & Evaluation FrameworkMonitoring and evaluation of established early intervention services within Ukraine is a key strategy in advocating for expansion of the services across Ukraine. All monitoring and evaluation actions will be guided by the principles of results-based management and human rights-based approach programming. Indicators to evaluate effectiveness will be designed based on global standards and beneficiary perspectives. A cost benefit analysis will also be required to display how existing resources could be redirected to produce better results for children and their families. Indicators will be developed in agreement with NGO colleagues from Lviv and Kharkiv, and in consultation with MOSP and MOH colleagues.

UNICEF will be working with partners at both the national and local levels. At the local level, UNICEF’s will conduct monitor and document the effects for children and families and lessons learned from implementation of early intervention services. Regular monitoring efforts will focus on the following areas: Monitor progress implementation through agreed indicators, working together with local government

counterparts and service providers. Conduct regular field/regional visits to support programme implementation and monitoring vis-à-vis the

regional authorities, service providers, including conducting progress reviews and preparing reports. Develop, collect, analyze and report on indicators based on available data. These analyses will support

baselines against which the effectiveness of the mechanisms proposed can be measured.

Documentation of the effect of early intervention services for children and their families will be conducted at the beginning of the initiative in the two developed early intervention service providers in Lviv and Kharkiv. At the same time, monitoring and assessment will be conducted among those service providers still in the process of integrating early intervention practices. Data indicators will be agreed and each provider will be collecting on a regular basis. UNICEF will work with early intervention service providers to develop baselines for the providers’ monitoring and assessment. Assessment will involve key stakeholders from both the local and national level. The assessment framework will be guided by the UNEG criteria, organized along these criteria: relevance, effectiveness, efficiency, inclusiveness and sustainability.

M&E Indicators:

Impact Indicators: # Children ‘at risk’ of separation who remained with families Status of children’s health/development29:

- % children who demonstrate improved positive social-emotional skills (including social relationships)- % children who demonstrate improved acquisition and use of knowledge and skills (including early

language/ communication)- % children who demonstrate improved use of appropriate behavior to meet their needs

Status of children’s families to manage their children’s special needs:- % families participating in early intervention services who report that early intervention services have

helped the family know their rights.- % families participating in early intervention services who report that early intervention services have

helped the family effectively communicate their children’s needs.- % families participating in early intervention services who report that early intervention services have

helped the family help their children develop and learn.

29 Indicators were developed based on review of indicators in the following documents: New Jersey Early Intervention System, County Performance and Determination Report, NJ Dept. Health and Senior Services, Division of Family Health Services, State Fiscal Year 2010-2011;Texas Department of Assistive and Rehabilitative Services, Division for Early Childhood Intervention, Annual Performance Report, FFY 2011-2012.

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Outcome Indicators: # service providers/ # regions providing early intervention counseling

(based on principles: family-centred, using multidisciplinary team, outreach occurring on regular basis and in child’s/family’s regular environment) # service providers providing home consultations, regular counseling (not in sessions)

Existence of normative provisions establishing legal/ regulatory framework for early intervention services:- Protocol/ instruction defining inter-sectoral coordination- Standards on screening, diagnostics & early intervention service

Existence of Early Intervention Professional Network:- # regions/ service providers participating in network- level of regularity of communication/ information exchange among members

Existence of higher education modules on early intervention/ Approval by Government and incorporation in academic institutions/ Ministry continued learning programmes.

Existence of communication outreach package (developed)- # regions incorporating communication outreach proposed- # general population reached (is informed) through public information campaign via TV and radio

channels - # internet users mobilised to support changes for children with disabilities and their families

8. Sustainability Strategy & UNICEF Exit Strategy:At the end of the country programme (end 2016), UNICEF will conduct an assessment directed by this theory of change and against the baseline indicators for the effectiveness of early intervention services. The review will consider to what extent early intervention services are contributing to: reduction of young children (0-4 years) entering in residential care (baby homes); increase in the health/ development abilities of young children with disabilities; and increase in the capacities of these children’s families to manage their children’s special needs. Evidence of results according to the theory of change accompanied by costing and documentation of implementation guidance is a requirement for a successful national scale up30.

Assessment results will provide understanding about the ability for early intervention services to be replicated throughout Ukraine. Furthermore, it will define whether there is a further role for UNICEF to take in this service process. Government ownership in the expansion and incorporation of early intervention practices and transformation of baby homes is crucial for national scale up. Throughout the process, there will be documentation on implementation of early intervention approaches with agreement by the national state partners.

Assessment of UNICEF’s further role will need to be defined based on the inter-rim assessment in 2016 and with a follow-up evaluation towards the mid-term intervention of this theory of change.

30 UNICEF will follow its agency criteria for scale up of pilot (model) projects (i.e. “10 sine qua non”).

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